Coast to coast charity bike ride for Gracie Belle

Hi everyone on the 28th - 30th of June 2021 myself and Gracie’s Nan and grandad will all be road cycling from Whitehaven to Tynemouth across Hadrian's wall we will be travelling 151 miles in 3 days, for 3 novices this will be a challenge in itself but we have already been training for a few months and have progressed from 10 miles and not able to walk the next day to our current 30-40 mile rides in a single day, we are hoping by doing this to raise awareness for such a rare syndrome and also help her parents with the numerous visits that are to follow to great ormand street for check ups/tests and future operations.

Below is Gracie's story if you’d please take a moment to read that would be greatly appreciated.

Gracie Belle was born in September 2018 with a rare condition called Apert Syndrome. (1-165,000!!!) 

Apert syndrome is a genetic form of craniosynostosis, the early closing of the soft, fibrous seams between the skull bones. The syndrome also means fusion of finger and toes and effects how her hand and feet look and work. Alongside this there are difficulties with breathing, motor skills, hearing, sight, mobility, speach, learning disabilities. 

Gracie has been on an incredible journey so far, defying all odds against her and showing the world what an incredibly strong and fantastic little character she is. Gracie's family have had to adapt to a different life. Becoming a family of four is a challenge in itself but this family have had to endure a new life of continuous appointments, hospital visits, surgeries and illness, worries and much more to speak of! 

Aperts syndrome has no cure it is a lifetime condition but surgery can help help some of the problems that Gracie will face.

In Gracie's life so far her little body has had to undergo 19 operations, mainly on her hands to separate fingers and 2 head surgeries to create space for her brain to have space to keep growing/release pressure on the brain. She has many more to follow this year. It is estimated that before Gracie reaches adulthood she may have had around 40 operations! All of these are a constant fear for her amazing parents, big sister, family and friends.

By helping to raise funds for Gracie we hope to be able to relieve some of the financial difficulties derived from Apert Syndrome. It costs a small fortune to support the numerous visits to various hospitals, overnight accommodation, transport, loss of earnings to support their family, and any home adaptations or equipment she may need in the future. 

This amazing family deserve all the help they can get and we wish them all the very best with supporting their beautiful little girl, Gracie Belle. We know this family will be forever grateful to each and every person who has shown them support in any way, emotionally and financially. 

Any amount you are happy to donate is so gratefully received, thank you so much for reading!